• Posted: December 22, 2015

Data Sharing Lexicon

About This Work Product

Sharing of genomic and health data is increasingly international, but must contend with discrepancies in the terms employed by applicable laws, ethics policies and regulatory systems. The purpose of this GA4GH Data Sharing Lexicon is to support international data sharing by promoting common/concordant terms within the GA4GH and across jurisdictions and research contexts with the ultimate aim of improving human health.

This Data Sharing Lexicon is a tool developed to promote data-sharing in general. It is not intended to focus on biobanking or the transfer or processing of tissues or samples. The terms included are predominantly derived from legal/regulatory sources but modified so that they are applicable to many jurisdictions. These terms are not intended to replicate definitions found in particular statutes, or within scientific and technical literatures. Additional resources can be found in the attached bibliography.

Where relevant, the Data Sharing Lexicon builds on terminology used in GA4GH documents and policies. It also incorporates terms already in use in existing GA4GH glossaries where these are relevant and appropriate.

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Work Product Details

Topics:

  • Privacy
  • Policy
  • access
  • law
  • regulation
  • accountability

Team

  • Alison Hall , PHG Foundation , Cambridge, United Kingdom - Lead
  • Anne Cambon-Thomsen , National Institute of Health and Medical Research , Toulouse, France
  • Clement Yongxi Chen , University of Hong Kong , Hong Kong, China
  • Alea Garbagnati , Roche , San Francisco, United States
  • Elli Gourna , University of Leicester , Leicester, United Kingdom
  • Jennifer Harris , Norwegian Institute of Public Health , Oslo, Norway
  • Emily Kirby , P3G , Montreal, Canada
  • Bartha Knoppers , Centre of Genomics and Policy , Montreal, Canada
  • Laura Lyman Rodriguez , National Human Genome Research Institute , Washington, D.C, United States
  • Howard Simkevitz , Ontario Institute for Cancer Research , Toronto, Canada
  • Anne-Marie Tassé , P3G , Montreal, Canada
  • Adrian Thorogood , McGill University / Université McGill , Montreal, Canada
  • Susan Wallace , University of Leicester , Leicester, United Kingdom